Hi Vicki and Collin
Good to see you are still going strong,plus started having holidays!!!if it was me,you would not see me for dust,although I realise things are different for everyone. I suppose it was because are life was one long holiday before Myeloma,or should I say it was just a way of life????
Make the most of what you have got!!!and I hope the myeloma stays locked in the cupboard for a long time,do not have any regrets.Love Eve and the better half Slim.
Hi Mandy
The news is not good,but from previous post you new this was going to be that way,Mandy you had no remission so you are high risk and it’s not great for people in this situation, you have good things on your side,you are young enough to have a back to back SCT,you have a family to keep you going,this is all good.
As for lying in a bed!!!! Waiting,that’s a no no,get in touch with Jet,she is also on UK Myeloma support on Facebook,she can give you information plus you can join a group that has under gone or planning to have the double,I can assure you Jet is doing so much with her life,she makes me tired just wondering were she finds the energy,Wendy is going for the double,that’s another lady who does not live to far away from you,she attends Manchester,and in between she has these lovely holidays,last one with husky dogs in the snow!!!!
Two years is just a number!!! Prove him wrong!!!! Eve
Hi Jo
Lovely to hear from you.
I miss the holidays as well,but it is out of the question here as well,I did think about trying to book a break in bournmouth at the hotel for cancer patients it’s something to do with the Mac Milan site,but it’s not the sought of holiday Slim wants,in his mind he thinks we can still go in are Motor Home,but with him not being able to do much,the hard work falls on me,so no holiday.
Yesterday Slims first appointment was 8.50,this involved a 6am start,we arrived at the hospital at 8.30,but nothing went to plan,Slim was drained and so tired and angry,we were told the Velcade had no chance of being up until after 11.30!!!!,when you rush to keep the appointment time and you sit there for hours it’s wearing,any way,we now will go in for 2pm,we just came home yesterday and went to bed,hence this posting at 1 am.
I am looking forward to my daughter coming back from NZ,the whole family have been so busy lately,we have not had time to catch up,so this will be good,Kent looks lovely this time of year with the blossom and fields of rape,just waiting for the blue bells!!its the smell I love,it all lifts the spirit after winter.
Your poor arms must be black and blue!!!!, are they expecting your kidneys to recover,and are you limited on your fluids!!!,with all this you are wondering how I am!!! I know you have your faith which must hold everything together,the only thing I feel is tiredness,but I know given time I will recover from that.
I agree with you the changers on the site I have not liked them,so like you tend not to post,plus we are old hands now in the Myeloma Bubble,this site is about hope but at Slims stage it’s about buying time,loosing Dai was a big one for me.i am going to send you a personal message Jo,through Myeloma UK. Love Eve
Hi Jean
Good for you,keep in that frame of mind,never give up,it will take you both a long way,.Eve
Hi Keith
Quick one!!
Get some chlorpromazine tablets from your GP,they stop the hiccups, Eve
Hi Sarah
Well all that is good to know!!!!
The worst thing I can think of that Slim did in the early days of Dex,is he got an idea to put everything behind the wardrobe,and I said no,when I went out I came back to an empty cupboard and it was all behind the wardrobes!!!!!,I do not let Slim drive on any treatment!!! Apart from that argumentative and stubborn ,I can cope with that by doing a dairy and pointing out its Dex time!!!!
Plus as time has gone on his body has adjusted,Slim was psychosis in ITU very frightening for him,but I put it down to the combination of drugs.
If they feel the Dex would help,why not try a reduced dose building up!!!! Eve
Hi Sarah
I cannot help but question the amount given of Dex ????
My husband is on his fourth treatment in three years,each time with Dex,and the days he has taken it are varied,example:he is at present on Velcade one injection a week,he takes 40 ml two days running!!!,when he had two injections a week he had four days of 40 which was changed to 20mg,so it is easy to reduce the dose!!!!, but 40mg of Dex daily for 2 weeks!!!!,did you ask Why????? Never never heard of that amount every day for 14 days.Eve
Hi Jean
After the blip as I call it,it took a very long time to recover,eventually Slim was walking again,he started treatment about two weeks after he came out of hospital,I thought it was to soon,but he coped well,but treatment failed,went on to CDV and then SCT.
Nothing has stopped the Myeloma,no real remission,he started CDR,but had a Artery blockage from hip to knee,and after 2 admissions with Sepsis,and taken off medication,wait and see!!!!,he had 2 biopsies end of last year,new the results were going to be bad,but expected him to be offered more treatment!!!
We were told in January. No more treatment as his cells were not growing,the said they would support him with platelets and blood,the consultant offered us a second opinion,which we took up,my thoughts were how can you decide on a persons life with a BMB ,the consultant made it very clear a team had sat down and decided,no treatment,and he thought a second opinion would not be able to come up with anything!!!!!!
After a couple of miserable weeks,we saw Faith Davies at the Royal Marsden,plus a lady called Peggy had told me she was being treated with platelets before treatment.
Slim is now being treated at the Royal Marsden,he starts his third cycle of Velcade this week,
We made a choice either (go home and wait to die ) or go on treatment with the full knowledge,we could be time,but a good possibility his immune system would break down.
We have no regrets with are choice,Slims attitude was I am not ready to Die,in three years I have come close to loosing Slim a few times,but he is a fighter,he made me promise I would not let them put DNR on his notes!!!!
We are now in a position that he has treatment 100 miles away,he is doing well and has a fair quality of life,over all he has improved,we still do not know if the Velcade is working second time round as Slim is Non Secretor.He held is own with a chest infection,also last Thursday took him to A&E and ended up in hospital over night intravenous antibiotics,no beds so got him home the next day with antibiotics,doing well.
Faith Davies has given us hope and at this stage it’s all we can ask for,I cannot tell you what to do Jean????? But we have talked about it and decided.He is not a man to just give up and die,so I will fight for him,I should also mention he is one of the most stubborn people I know,so his attitude is good.
I hope our story helps you and Michael to make decisions ,with a disease like Myeloma I believe even consultants are on a learning curve,I also believe a person does not die until they are ready,I hope you find the strength to make decisions for you both. Love Eve
Hi All
I think once you understand what’s going on it’s easier to take control of,keep yourself busy,telling the cat off is a good one,it cannot answer back,as a carer the one thing that use to annoy me,was my hubby could not see it was the Dex that made him so stubborn and argumentative as time goes on it does get easier. I use to keep a bit of a record,next to the tablet regime,which helped specially when he had any symptoms of general illness and fatigue . Eve
Hi Jeff
Glad to see you are feeling better,and being positive all helps your condition.
CDR is very like the CDT treatment you had,as you are slightly older,once they are able to control your PP,they tend to use it as a maintenance drug until it stops working,some people have been on it for a long time,as you know everyone reacts different to the drugs.eve
Hi Molly
There are a lot of people in the position as your husband,it does depend on how his heart is affected by it. The Royal Free Hospital in London is the only hospital who deals with it,but they liaison with local hospital,it is rare 600 cases a year.
I cannot pretend it not serious and tell you not to worry!!,but please get in touch with Ellen or Maggie,even if it’s only by E Mail I am sure she can give you some peace of mind,there are people on here who are doing well and some have not,so until the condition of his heart is completely known you are in the dark.
I hope by boosting this post up,people see it and reply,and give you a much needed boost,you could try going into Amyloid Support Site or go into the library on here,plus there are Videos on here to watch. Love Eve
Hi Jo
You must feel that the Damascus Sword is dropping!!,all these new treatments effecting people in different ways!!,I think even the experts are on a big learning curve with us.
Sorry Mandy about taking your post but Jo does not post much for herself,you have to drag the news of her condition out of her,said in a nice way Jo!!!,please post more. love Eve
Hi Dick
You take your chances!!! Slim was unfortunate ,as I have said before Slim is one of the 15 percent who is high risk,good results,but it comes back quickly,you seem to be in the same predicament as Andy,!! Cannot get your PP down!!!. Hindsight would be wonderful??
You have a lot going for you Dick, young,fit family plus time,so I think it’s worth communicating with Jet and the support group for tandem SCT,I hope you get some knowledge out of it.
Keep positive,the first time you come out of remission is the worst,all your hopes are built round a SCT,any bad news after that is expected in some ways,you still have a chance of going up on this roller coaster!!! Stay positive.Love Eve
Hi Dick
I am sorry to hear your SCT did not work, Helen R and you have both slipped it into someone else,s post!!!!!,I did the same when it happened to Slim,why do we do that??????
I think it,s because we do not want a lot of post saying ( I am sorry ) it’s bad enough going through SCT with nothing to show oft it !!!!,Slim looked on it as 6 months taken out of his life.
You are young and have a young daughter,may it suggest you get in touch with Jet,she has had back to back SCT,also there is a separate forum on it,she can tell you about it.She has a blog plus can be contacted on UK Myeloma Support. Well worth doing some research.Love Eve
Hello John
Just popping in to say hello!!,I hope your are doing ok,or at least as well as can be expected,as you had a rough deal,and no time to adjust.Eve
